dimarzio Posted September 21, 2017 Share Posted September 21, 2017 I've been doing a little research on this and have been a number of articles and studies to read through, but this interview gives a clear, non technical interpretation: https://sclerodermanews.com/2016/05/17/tpe-for-scleroderma-interview-with-edward-harris/ Has anyone else done any research of this interesting treatment, know of any UK centres that might consider offering this or have any idea of the costs involved, bearing in mind that the NHS will not provide it? Quote Link to post Share on other sites
Joelf Posted September 24, 2017 Share Posted September 24, 2017 Hi Dimarzio, I've found a rather old thread on Plasma Exchange. There's also an article Successful long-term (22 year) treatment of limited scleroderma using therapeutic plasma exchange: Is blood rheology the key? which I hope you find helpful and informative. Kind regards, Quote Link to post Share on other sites
dimarzio Posted September 25, 2017 Author Share Posted September 25, 2017 Thanks Jo, I can't seem to find anyone in the UK willing to provide this treatment though. In any event, it is pretty costly due to the frequency of treatment required. Quote Link to post Share on other sites
Joelf Posted September 25, 2017 Share Posted September 25, 2017 Hi Dimarzio, I can't imagine that it would be available on the NHS (much too expensive), even somewhere like The Royal Free Hospital, who are very au fait with the latest treatments for scleroderma (although it might be worth approaching your doctor to see if a) they've ever heard of it and b) if they would be prepared to refer you for treatment.) Kind regards, Quote Link to post Share on other sites
TonyTr Posted November 24, 2020 Share Posted November 24, 2020 Hello, Has anyone from this thread tried TPE as a treatment option? Do you still see that as a promising option, or your opinion changed since the last post? I want to convince my doctor to try that on me to see if that can help with my CREST and constant fatigue. If you are interested I can post my experience here. Best regards, Tony Quote Link to post Share on other sites
Joelf Posted November 24, 2020 Share Posted November 24, 2020 Hi Tony, We do have a medical page on Therapeutic Plasma Exchange here, which I hope you'll find helpful and informative. Kind regards, Quote Link to post Share on other sites
TonyTr Posted November 25, 2020 Share Posted November 25, 2020 Thank you Joelf! Have you ever tried TPE yourself? It may be hard to convince doctors prescribe TPE, but do you think regular plasma donation may be some sort of "light version" of TPE? Unlike TPE, plasma donation is much easier to accomplish. Do you think in case when TPE is impossible plasma donation is better than nothing? Best regards, Quote Link to post Share on other sites
Joelf Posted November 25, 2020 Share Posted November 25, 2020 Hi Tony, I've never had TPE, so can't advise you from my own experience. I'm in the UK and frankly the chance of obtaining that particular treatment is negligible. From what I can gather, it's quite a invasive procedure and not something to be tried unless it's a fairly last resort. Your scleroderma expert is really the best person to advise you of any treatment needed. Kind regards, Quote Link to post Share on other sites
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